Monday, November 30, 2009

One month post-surgery

Well, apparently it can take six weeks or more to feel normal after an endoscopic third ventriculostomy. I wish they had told me that when I left the hospital, or I wouldn't have spent the last month trying to get back to a routine that I clearly wasn't ready for. I had an appointment today with a really sweet Neurosurgical registrar who very gently told me to stop stressing out and that everything was fine. He may even have laughed at me, but in the nicest possible way. He showed me my three CAT scans, pre-surgery, two days post, and the one I had last week. They clearly show things are returning to a proper size. He also told me that the pounding feeling I've been feeling when I stand up is to be expected.

I actually had a great day yesterday. The weather was stunning and Hamish and I finally got the vege garden planted. Unfortunately I then spent the night tossing and turning in another bout of hellish insomnia. There can be nothing worse than lying there wanting to sleep and being absolutely exhausted but being unable to drop off. At 5.30 I finally gave up and formed a nest for myself on the sofa where I read until Hamish got up to go to work.

Unfortunately with all that tossing and turning I've spasmed up my neck muscles again, and I can quite categorically state that it is my neck which has been causing that pounding sensation at the base of my skull. I am really annoyed with myself, but I know that I can deal with it again and that massage will help. I did, however, beg my GP for some more sleeping pills. I am developing an absolute hatred of Valerian and I need a break for a night or two. A couple of stress free sleeps and I'll try sleeping sedative-free again.

Onwards and upwards I guess. I did at least get in around 40 minutes of walking between the hospital and the GP's office, exploring some new trails I didn't know existed. Now it's raining very softly in the most romantic kind of way. There is no wind out and the tui are singing loudly in the Norfolk pine. Now all I need is some sleep!

Saturday, November 28, 2009

And no, this is not how recovery was supposed to go

In the post I wanted to write I would be telling you all about how I was running again, and cycling again, and had spent heaps of time in the pool. I would be describing the weights workouts which were restoring my lost muscle and how I'd been getting heaps of stuff done around the house with a slightly lighter exercise schedule.

Well, that's not quite what has happened. I've been to the gym once. I sat on an exercise bike for half an hour, wound up feeling like I was about to have a vertigo attack, got off and went home. I went for a lovely long walk around the Karori Wildlife Sanctuary with Jo, walked home from the hospital earlier this week (around half an hour), walked into town once (around an hour), and walked around the block a couple of nights back (again, around a half an hour).

I haven't even been able to return to work full time. I've managed a few full days, had a few days off, and worked a few reduced days. I haven't taken back my team manager role officially yet, and probably won't now till next year.

I hate this. I feel like I'm letting my office down. I feel like I'm letting everyone else down as well. I want to be the mad, hardcore, bouncing back quickly person everyone thinks I am. I hate worrying the people who care for me. I want to be the active, positive and happy person they are used to me being. This is, I know, very silly, but it doesn't stop me thinking that way.

All my life I've had periods of time where my body has done things which have thrown me into a spin. Some of those incidents have been triggered by earlier neurosurgeries. There were the two months spent trying to find the Addison's Disease diagnosis. There was the horrific viral illness I came down with after my Masters degree that led to a year or so of depression, panic attacks and weight gain. During each of those times I wondered whether I'd ever feel normal again. However I've been so well for the last few years that I guess I'd come to believe it couldn't happen again.

Instead I'm left with some kind of weird post-surgery thing that has left me feeling trapped in my head. It got so bad I went back to the A & E on Monday. At least this time I only spent three hours in the waiting area, and another three hours out the back. I had a CAT scan, was told it looked fine, and was sent home. The neurosurgical registrar couldn't really offer much advice, other than to suggest that my brain might still be trying to get used to normal pressure.

It's been a month since surgery and I don't in any way feel normal. I still experience a pounding sensation like blood rushing to my head when I stand up or move in a way that increases the pressure in my skull. I still often feel like I'm about to have a vertigo attack at any moment. At times I feel like I have a thousand little electric shocks going off in my skull. There's a strange kind of pressure sensation - not pain, just like my head is being squeezed. It centres mainly around the base of my skull, but can move elsewhere at times. I can't get away from it and it's extremely hard to relax. It has at times driven me to distraction and to tears. I've once or twice caught myself on the verge of a panic attack, but have so far always managed to get my breathing under control.

I've done what I can to rule out contributing factors. I had huge issues with my neck after the hospital bed rest so have been getting massages, physio and accupuncture. They've helped to some extent. On Thursday I went to see a cranial osteopath, which did help calm me, but didn't really help resolve my symptoms.

I've had big issues with sleep. I ended up getting some sleeping pills and then, when they ran out, trying Valerian. The first night without sleeping pills left me staring at the ceiling for most of the night, however sheer exhaustion led to me sleeping solidly for ten wonderful hours last night. Bliss!

I have no appetite so have been eating utter rubbish just to eat something. Eating also distracts me from the unpleasantness, so I've been eating even when not hungry. Of course that's leading to a little weight gain, which isn't helping with the general stress or with my sense of needing to live up to people's expectations. I also worry about how much harder it will be to get myself back into form once (hopefully) this is all resolved.

I have another hospital appointment on Monday and will be pushing harder for some reassurance. The problem is that there really won't be any. It seems likely that the issues I'm facing are indeed due to the change in cerebrospinal flow. However I doubt anyone will able to give me any advice as to how long I can expect to feel this way. I am again left afraid that I will never feel normal again. I realise it's a bit soon to be pushing the panic button, but it is what it is! There's another part of me which dreads having to be operated on again, with the resultant sleepless nights jacked up on Solu Cortef and the discomfort.

It's not all bad news. My sense of humour is still holding in there and I haven't completely lost the plot. In my more rational moments I know this can't last forever and that there will be an answer. I will never again take feeling normal for granted, and I'm sure that I will appreciate running and cycling and all that so much more when I can do it again. A big part of the challenge is simply finding ways to distract myself so as to not let it all get on top of me, and thankfully I have some well-honed coping strategies which I'm having to dust off and put in place again.

Oh, and there are the cats, and there's Hamish, and there's my great friends, who are all helping. It's been hard reading all the Thanksgiving blogs when I feel so rotten, but I am grateful to you all.

Wednesday, November 11, 2009

Random Hospital Memory

Someone had brought pretzels for the ward and the night staff were particularly fond of them. For a while there the nurses doing my two hourly obs all had garlic breath. It got to the point where I was starting to wonder whether I was also experiencing scent hallucinations.

Tuesday, November 10, 2009


Well, I don't know how quickly I thought this whole recovery thing was going to go. I mean, I've had shunt revision surgery before, but not for nearly 15 years, and an endoscopic third ventriculostomy is a whole different beast. How long is it really supposed to take for someone to recover from having a hole drilled in their head, and a probe stuck into their brain to make another hole in there?

What I can tell you is that I've been tired - much more tired than I expected. Thankfully I haven't had too much disassociation. I guess the change in brain pressure from a ventriculostomy is more subtle than a shunt revision, and my brain didn't freak out too badly. However it has become clear to me that I really wasn't that with it before the actual operation. Hamish reminded me that I'd had a CAT scan and x-ray the night I was admitted to hospital (I could only remember the CAT scan). He also reminded me that he was there for both of them. I even had to ask whether he was there when the neurosurgeon was discussing whether to install another shunt, or whether to do the endoscopic procedure. I'm glad he was, as he's been able to reassure me that I went with the surgeon's preferred option. I'd started thinking that the surgeon actually wanted to put another shunt in, and that the ventriculostomy was something I'd pushed for.

I really wasn't myself for those first couple of days after the surgery. I felt overwhelmingly grateful to everyone who was so supportive to me, but I had to deal with a bit of guilt and dented pride, feeling like I'd become a bit of an overanxious, whining nuisance. Of course the nurses are used to dealing with far worse than me, but I wanted them to know that I'm normally a lot more rational. Stupid woman - you just had brain surgery. Of course you're allowed to lose a little perspective!

In the aftermath I've been dealing mainly with neck and shoulder issues, which were brought on by having to lie flat for two days and lifting my head off the pillow in an attempt to eat. I didn't have a headache as such, but my head felt really tight and standing up was causing my blood to pound in my head. In my more paranoid moments I was worried this meant there was still something wrong, and that the operation had somehow been a failure. I spent too much time reading up on ventriculostomy failure rates and ended up having to tear myself away. It was this tightness, as much as the actual surgery, which was causing me to feel so worn out.

In my defence, I didn't exactly take the weekend quietly. I got up on Saturday morning and went grocery shopping (one week post-procedure), and then Hamish and I went shopping for a new bathroom vanity and taps. I rested up that afternoon, but on Saturday night we walked down the hill to visit friends at their new house. I drank several glasses of wine then walked back up the hill again.

I'm finding that my sleep patterns are still a bit disturbed, and Saturday night was a good example. The tightness in my head bothered me to distraction. I couldn't relax and got maybe a couple of hours maximum. It took a big dose of Hydrocortisone and a long hot shower to get me moving the next morning.

On Sunday I drove Hamish to Paraparaumu for a glider flight. The weather was perfect and he escaped without air sickness, even flying the glider himself. He landed with a huge grin on his face and it was nice to do something for him after putting him through so much stress. Now both of us have expensive hobbies ...

We followed that up with lunch at a beachside cafe, then returned home where I felt unable to rest. Instead I headed out into the garden for an hour or so, and only after that did I allow myself to crash. Thankfully I did at least sleep well.

On Monday the weather changed and it was cold and wet as I made my way to my office for morning tea. My neck and shoulders were still bothering me, the tightness in my head in particular an issue. It was great to be back at work for a while but catching up with everyone was overwhelming. I had optimistically taken a gym bag with me in the hope of sitting on a stationary bike for a while. Instead I headed straight back home again. I put a DVD on and snuggled up under a duvet on the sofa, but fell asleep a few minutes in and woke as it was finishing.

It was only then that I think I really accepted recovery was going to take a little while. I fell asleep quite quickly last night but spent an hour or so in the middle of the night tossing and turning. I made an appointment with my physio as soon as her office opened. A few good cracks of my back later and some gentle kneading of my neck and I was feeling more human. It was becoming clear that the strange head sensations were indeed neck and shoulder tension and not a sign of anything more ominous.

I've taken it easy all afternoon. I have no plans for tomorrow, and although I've said I'll head into work for a few hours on Thursday if it feels too much I'll head home again. As much as it kills me I think any form of workout is going to have to wait till next week. This resting stuff is hard!

Thursday, November 05, 2009

In which normal transmission is postponed by a bit of neurosurgery

Well, without wanting to sound too dramatic, I have been in hospital this week. I got home yesterday and am still trying to fully comprehend the last few months! Well, obviously I went silent on the blogging front and part of that was that it all just got too hard. The marathon went well, then there were the two disastrous half marathons, followed by an awful 80km cycle race in Featherston. It was cold, wet and very windy. I cycled most of the way on my own, got poured on, hailed on, finished ten minutes slower than I did last year, and injured my back. I spent the last 15k in excruciating pain, wanting badly to just stop and let the SAG wagon pick me up.

After the horrid race I got a cold which knocked me out for another couple of weeks, during which time my back refused to settle. I got the physio's permission to try the next race on the Taupo lead-up schedule, a four-loop 100k'er in Waikanae which was mostly flat. In the end I made it round one loop, with the back injury taking all the power out of my legs. I didn't have it in me mentally to keep going as I watched pack after pack fly past me.

At the same time I was battling more hormonal issues. My doctor and I suspected I was going through premature menopause, so I came off the pill so we could really see what was going on. I'd been blaming the poor training and the roller coaster of emotions on that. However over the last month it felt more like depression. I couldn't run because of my back, I couldn't seem to cycle for peanuts, I lost my appetite so was eating crap in an attempt to just enjoy eating SOMETHING, and my swimming wasn't going to be ready for the Rotorua half Ironman. In fact, my bike form was so dire that I even doubted I'd be getting around the Taupo Cycle Challenge.

To make it worse I then started suffering from increasing migraines. I spent Labour weekend on the sofa with no energy to do anything, with my head pounding, kicking myself for not cleaning our untidy house or running or cycling. Jo and I had been planning a Rimutaka incline run but I was in no state, and the Gearshifters had headed out to Paekak hill without me after I failed to keep up with even the slowest riders (having the day before finished second to last in the time trial).

I battled my way through work this week but by Wednesday night it was fairly clear there was something more ominous going on. I wanted to get through Thursday before heading off to hospital. I had to sit in on two interview panels and the Immigration Bill was due to go through its third reading. I didn't want to miss the event I'd been working towards for nearly four years, and I didn't want to miss celebratory drinks! I somehow made it through the interviews but twenty minutes into the third reading my workmates were bundling me into a cab and I was off to the A & E. Six hours in the waiting room in horrendous pain (nearly crying each time they called out someone else's name), then six hours out the back, where I at least had a cubicle for most of it, I finally made it onto a ward at 3am.

By way of explanation, on top of my four autoimmune disorders (Addison's Disease, Hypothyroidism, Pernicious Anaemia and Premature Ovarian Failure) I also have Hydrocephalus, or water on the brain. I was diagnosed at six months, had a shunt inserted to drain the cerebrospinal fluid, and managed to live a fairly normal life after that. I've been lucky in that the shunt remained unblocked for nearly 15 years. However it seemed my luck was finally over. The increasing buildup of cerebrospinal fluid in my head was causing a rise in intracranial pressure, horrific headaches and nausea. I was not in a good way!

I spent the next day waiting for surgery that never came, on nil-by-mouth and a drip, and then most of the next day as well. By the end of the next day the intracranial pressure had increased to the point where I was sleeping most of the time anyway. Finally I had the operation. I thought I'd just be getting the shunt repaired, but the surgeon recommended an endoscopic third ventriculostomy (slight crustiness warning). This meant that they drilled a hole in my skull and inserted a probe through my brain and actually made a hole in the wall of one of my ventricles to enable the fluid to drain away more naturally. The video I've linked to above shows the probe being inserted into a guy's skull and the hole being made in the ventrical. It explains the procedure quite well.

Because they'd actually made a hole in my brain I had to spent another couple of days completely flat. It wasn't a particularly pleasant time. The change in brain pressure caused the poor organ to freak out a bit so that I apparently didn't always make a lot of sense, and I had a reaction to the Tramadol I was on. I had some extremely unpleasant auditory hallucinations. It sounded for all the world like there were flies buzzing around in my head. Plus I was on such a high dose of my cortisol medication post-surgery that I was completely unable to sleep.

Thankfully my cortisol medication was dropped just enough to finally enable me to get a little sleep. I also took myself off the Tramadol and the hallucinations gradually eased. To my surprise I was hauled off for another CT scan which showed the procedure seemed to be working and my ventricles were returning to a normal size. With no signs of any brain bleed I was slowly allowed up and, with the exception of a brief vertigo attack, I was able to convince the physio and occupational therapist to let me go home. Question from the physio "So, what kind of activity do you usually do?" My response: "OK, really?" followed by a brief description. He decided I'd probably be fine after that! I mean I was at the gym doing shuttle runs and burpees the night before I was admitted to hospital FFS! And yes, hello stupid!

So now I'm home with seven clips in my skull and some reducing brain-pressure related disassociation. All things considered I'm feeling remarkably good. However obviously the Taupo Cycle Challenge is off, Rotorua is off. I'm feeling bad about being so hard on myself over the last few weeks when there was obviously something wrong. I don't know how many months my shunt's been blocked, as the pressure builds up gradually so it could have been affecting my training for some time. All I know is that it's good to know I came second to last in our time trial for a reason!

My plans now ... well, I don't think I should really have any because I have no idea how long I'm going to take to return to normal. I just wish I could have the very cute hospital physio as my very own to develop my comeback plan! I think I should probably just take the next couple of months to get better and enjoy myself and slowly rebuild the muscle I lost lying around in bed not eating. Sigh!

I'm feeling so much better that I'm contemplating a little time on a stationary bike next week, and then some walking with a little running thrown in after that. I'll get a PT to throw a rehab weights programme together for me so that I don't completely lose my muscle. Once the wound in my head heals I'll be back in the pool a fair bit I think.

So, well, that's my life! How's everyone else?! Mike - planning to travel to Welly for that U2 concert? :)

Now that I'm back you'll probably be getting reasonably regular updates on my rehab. I have a new pink pair of MiAdidas and a cute pink and grey 2XU set of trishorts and singlets to try out, so you can bet I'll be wanting to get some use from them!